How “safe” is a savings account if you leave all your money there for your working life, but the interest it earns doesn’t keep up with inflation when you are no longer working and need it?

This is why many people keep some of their money in savings, but look to investing to amplify their other money. For most people, the only way to attain financial security is both to save and invest over a long period of time.

It reminds us that we still have a lot of control over our future, maybe even more than this disease does.

I work hard for my money. It makes sense that my money should be working for me, too. Why should investing be only considered the playground for the wealthy?

I resolve that it shouldn’t be. And for those of us in the U.S. with chronic disease, who live in this capitalist society, it is even more imperative.

Isn’t it gambling?

Well OK, yes and no.

For example, my clutter is gambling:

“I purchased bargains with potential usefulness. I bought things as a gamble. I gambled on the chance that one day, my dreams would come true. I would turn into the kind of person who mended expensive but damaged clothing. I would be the tinkerer who repaired a lamp that made guests gasp in delight…(But) an amazing bargain that ultimately makes my life more difficult isn’t an amazing bargain at all.”

from Dana White’s book Decluttering at the Speed of Life

So is playing baseball: “You can’t steal second base and keep your foot on first.” (Frederick B. Wilcox)

Thus I guess that investing is gambling too, but it’s risk that can and should be mitigated. (You should never risk more than you can lose and still be okay.)

So “learn to earn”

While we probably aren’t born knowing how to invest, I think everyone should learn at least the basics.

Visit the SEC website. If you are still working, take advantage of webinars, podcasts and classes offered by your 401k provider. Be careful about the sources of your info, but you can teach yourself.

I try to eat fresh produce first thing in the morning for no other reason than I felt better doing it as I tried (and failed) the Wahl’s Protocol Diet.

This has you start the day with a fresh kale smoothie (after the overnight “fast” you get from sleeping) to “feed your mitochondria.” This is my compromise.

Right now on Mondays I make a big bowl with a bag of frozen peas, a cup of nuts or mom’s “trail mix” (has nuts, raisins and chocolate!), and whatever leftover salad dressing (I’m using honey-mustard at the moment).

I keep it in the fridge with a spoon and just eat a few spoonfuls first thing in the morning while I’m heating up water for tea or oatmeal. It usually lasts me the week.

Whole Wheat Tortillas

I find tortillas are an easy carb to keep instead of bread for sandwiches. They seem to last longer in the fridge, I get some whole grains in my diet, and they are easy to handle while working at the computer.

I really became a fan when I started eating salad greens wrapped in them. I justify it as an alternative to croutons. See my post about it here: My salad wraps.

Recently I’ve had them with a filling of plain cream cheese, a pinch of crystallized lemon (which i already have) and raisins.

Another time I had some leftover bacon that I stirred into peanut butter and spread into a warm tortilla. Yum!

Ramen Noodles

Finally, this week I had an a-ha moment. It never occurred to me to buy the cheap packages of Top Ramen I so relied upon in college and NOT use the flavor pack! Or to just mix them up into soup. They are so flavorful and salty I viewed them as a bit of a guilty pleasure.

Then I was reading this old blog entry when I got to the part about making stir fry and using ramen noodles. I realized this would solve a problem for me: a shelf stable way to have a quick rice alternative! (Exploding head emoji)

I always think of rice as a quick and easy base for a meal. But it is messy to fix in a microwave and I don’t have space for yet another electric device like a rice cooker. So I asked a caregiver to pick me up some ramen packages this week.

My first meal with them was noodles, frozen broccoli, frozen meatballs, and just a pinch of flavor pack. Genius!

“Accept the limitations of the space you have, and declutter enough that your stuff fits comfortably in that space.”

–Dana White, Decluttering At The Speed Of Life

I imagine most people have already figured this out by adulthood. And I wouldn’t consider myself slow. But as a kid, I never paid attention to how things stayed clean.

I adjust too easily to an imperfect situation: “…grabbing a coffee cup from the top rack of the dishwasher or a pair of socks from the pile on the couch doesn’t feel the least bit awkward, so the visible pile doesn’t register as a problem.”

I pretty much always lived alone and kept my home clean enough for visitors. But when I got married suddenly we had two households of stuff in one house. And I never realized how to be disciplined about decluttering. Everything seemed useful!

Now that we both have mobility issues, it’s become obvious that we can’t move freely around this much stuff anymore. The aforementioned Dana White has written extensively about this. Luckily, she speaks to me.

Clutter threshold<

Dana talks about how we all have our own “clutter threshold,” the point at which all the stuff we own has become overwhelming. That if we live above it, our space is out of control and hard to keep clean, but if we can declutter down below it, our space at least stays manageable.

That’s where I’m aiming now. Decluttering is getting rid of things we don’t need. But the point of decluttering is to keep stuff. It isn’t to get rid of things we want to keep; it’s to identify those things and then to make space to enjoy those things.

Clutter is one of my triggers

It’s also about the stress I feel living in an out-of-control environment.

A 2013 study showed that while both positive (like a wedding or the birth of a new child) and negative (like living over my clutter threshold) stress can impact the course of our MS, the negative stress can actually trigger disease activity.

Could it be affecting or partially responsible for my MS? How could it not?

Medline

I poked around in the National Library of Medicine’s PubMed* search: [(skin[Text Word]) AND multiple sclerosis[MeSH Terms]], but didn’t see anything relevant. Mind you, I’m not a scientist or expert in medicine. Caveat Emptor!

*PubMed comprises more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.

I did see at lot of discussion about MS and sympathetic skin response (SSR) as diagnostic test. The SSR test measures whether the sympathetic nerves of the skin are working.

Apparently in a lot of MSers, the response is absent in one or both limbs, for example. In healthy subjects the response is always there. This is interesting, but not something I think I could fix!

Google search

Next I tried an internet search. Again I found nothing MS specific, although there are some warnings on various drugs about possible skin cancer. Meaning that some subjects began showing skin cancer during or after the trial.

There is no way to tell if the skin cancer was already “on board” before the trial started. Or if the drug made them more sensitive to the sun.

Hey, did you read the article that hot cocoa made with high-flavonoid chocolate could ease MS fatigue? I have MS fatigue. I like cocoa. This sounds like a recipe for an informal experiment!

The headline of the article I read is Daily Cup of Flavonoid-rich Cocoa May Help Ease MS Fatigue. It details a small trial of 40 MSers, half daily drinking high-flavonoid cocoa made with rice-milk and half drinking low-flavonoid cocoa. (Was the choice of rice-milk just a nod to food allergies?)

Fatigue was measured by a quality-of-life self-report, and fatigability was measured by a six-minute walk test (i.e., how far could a user walk in six minutes).

The trial concluded that the high-flavonoid cocoa was not only linked to heart and gut health but may “improve fatigue and fatigability” in MS.

What is a Flavanoid?

They are a type of plant-based antioxidant that occurs naturally in fruits, vegetables, wine, and tea, and are responsible for the vivid colors found in produce, for example. Studies have suggested that flavonoids have anti-inflammatory and neuroprotective benefits.

One place they are found is in cocoa beans. Usually the cacao tree produces the beans that are then roasted and ground into a paste called the cocoa solids.

Thus, cocoa solids are a good source of flavonoids and the percentage of solids in the product should be listed on the side of a package. You can use this number as a general guide for choosing chocolate made with the highest concentration of solids.

Unsweetened cocoa powder has 88 to 96 percent cocoa solids, for example. Dark chocolate contains 45 to 80 percent, and milk chocolate has only 5 to 7 percent, as the solids are “watered down” with sugar and milk. White chocolate doesn’t contain any.

The length of time you expose foods to heat can significantly impact the antioxidant content.

And imagine the roasting process by which the cocoa bean is converted to a cocoa solid. Although roasting is considered a “dry cooking method” and one of the best ways to retain nutrients, it may be reducing antioxident content by as much as 60%.

This was a small study; more research is needed of course. But it seems like a thing that would definitely qualify for a go.fund.me effort. Hot cocoa is pretty much universally liked.

If you don’t like dark-chocolate cocoa, a square from a dark chocolate bar upon waking seems like it would help. If you want a higher flavonoid count, try making your own cocoa with unsweetened cocoa powder.

Maybe it is just a quality-of-life thing. Having a cup of cocoa every day makes you happy. We deserve that.

And even if you only drink milk-chocolate cocoa, as long as there are some solids in it, you are getting a few flavonoids. 🙂

I call it genial because compared to giving myself daily shots, it is just a daily pill I swallow. But “genial” by no means suggests benign. This drug is as toxic as everything else I have tried. Incidences of PML occurring in people taking Gilenya do happen.

This Method

Everyone’s immune system contains lymph nodes, which are tiny glands containing immune cells (AKA white blood cells) called lymphocytes. Lymphocytes are usually helpful, but in MS they get confused and attack the central nervous system (CNS), and permanently damage the myelin sheath.

Gilenya activates sensors on your lymph nodes to restrain some white blood cells. That way, these blood cells aren’t released into the bloodstream, where they can attack. (Other lymphocytes are still circulating and available to do their job, watching out for intruders like viruses and bacteria.)

It also activates sensors on your heart, which can cause your heart rate to temporarily slow down. So it is recommended that all users be monitored by a medical professional for at least six hours after the first dose.

My Experience

I have been taking Gilenya since April 2012. This is from an earlier blog post:

…I packed my backpack with items to stave off the boredom of sitting around that long: two books I am currently reading [one fiction and one non-fiction], a book of Sudoku puzzles [I’m addicted!], lip balm…

We also brought a cooler with yogurt, granola bars, and sandwiches. [My husband] brought a fingertip pulse oximeter so I could check my pulse regularly on my own.

In the end, the whole experience was pretty anti-climactic, which is probably the best-case scenario, really. I read one book the entire time, and they let us leave before the rush hour started.

It was a record heat in SF, which lent the whole outing a surreal feel, and now that I’m onto Day Five, it is like it never happened…

It’s now been 6 years and I have tolerated it fine, but it has not made any amazing difference, as I had secretly wished.

Things I’ve Learned

Gilenya might increase your risk of skin cancer. It can render a “live” vaccine inert while using it. And it can interact with a multitude of drugs, including vitamins, and herbal products.

It is rare but macular edema (a correctable eye condition causing swelling and blurry vision) may occur within the first 3-4 months of starting. It may be confused with an MS exacerbation, so check with your doctor, and consider annual ophthalmology appointments.

Finally, I have started to see reports about a “rebound relapse” phenomenon when users go off it. Obviously, once you go off, you should expect that the “door” of all lymph nodes is no longer being guarded so you most likely will resume MS where you left off.

In 2004, a new MS drug was approved by the FDA. As opposed to an interferon, Tysabri (natalizumab) is “a monoclonal antibody”. For more explanation, try this.

It blocks white blood cells from binding to molecules which want to drag them into the brain where they would cause inflammation.

As an aside, at this point, all the MS meds aim to reduce inflammation in the brain. This is a primary goal. Symptom management. Because we STILL don’t know what causes the disease. Ergo we still can’t say any of them “works” beyond their ability to reduce inflammation in some brains.

In healthy (read ‘non-treated’) people this process is desired. It happens when the body is fighting an infection. Without this process, those on it are more susceptible to infection. The body is without one of its tools.

Just a year after it was approved, my neuro switched me.

My First Infusion

When I began Tysabri I was cautiously optimistic. It was a big deal: a new drug administered by monthly infusion as opposed to those icky (to me) daily shots. So I went for my first infusion on Thur., 2/24/2005.

At this point, I needed to walk with a cane, I was experiencing some rapid loss of energy daily (fatigue) and had a bout of double vision. But the infusion went fine, and I was hopeful I’d see improvement soon.

I had just moved in with my boyfriend. So the next morning we watched the news together in horror: scrolling across the bottom of the screen was a notice that Tysabri had been taken off the market because several subjects of its latest study had died!

The fallen test subjects had developed a severe brain infection, called Progressive Multifocal Leukoencephalopathy (PML).

PML

It is described as “a viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”

We now know that PML is caused by the JC virus, something we all already carry, but is usually kept in check by a healthy immune system, something we MSers don’t have.

Other risk factors include duration of therapy and presence of the anti-JC virus antibodies.

If they aren’t already triggered, these antibodies might appear after time on Tysabri, for example. This is what doctors are looking for every six months; it’s a “marker”–not that the individual definitively has PML, but that they are more likely to get it.

My Second Infusion

Eventually the drug was brought back to market, based on the reasoning that its benefits were greater than the risk. And in 2011, my neuro tried me on it again.

And again, the first infusion went fine. I had regressed to using a wheelchair to get around and I was tele-commuting full-time from home. Again I felt cautiously optimistic.

The next month I was sitting next to another MSer and she was saying how great she was doing on the drug. I nodded and smiled, hoping for the same.

Suddenly she looked at me oddly and said “You’re starting to break out in hives. I can see it on your face! Aren’t you itchy?”

The nurse rushed over and discontinued the infusion right away. As she pumped me full of Benadryl and Solumedrol, she told me that I was now hypersensitive to Tysabri. That ruled it out for me ever again.

I admit I was disappointed.

This is on the 2019 Safety Information: “Patients who receive TYSABRI for a short exposure (1 to 2 infusions) followed by an extended period without treatment are at higher risk of developing anti-natalizumab antibodies and/or hypersensitivity reactions on re-exposure”

Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.

My liver toxicity from Avonex meant that I couldn’t take anything else with interferon, ruling out all other MS drugs at the time, except for one: Copaxone.

Copolymer-1, as the chemical was originally called, was discovered by scientists in the 1960s in Israel. Again, I don’t know what they were looking for, but they discovered that it suppressed MS-like disease in mouse models.

[As an aside, this is called Experimental Autoimmune Encephalomyelitis (EAE), still accepted today as a murine model for this disease. Interesting because MS doesn’t seem to appear in the animal kingdom, or maybe their lives are just too short to foster development of a slow-progressing disease like this. So scientists needed an animal model to study and use in tests. But we still don’t know what causes human MS, so the thing researchers use to induce it in animals may sometimes cause unintended consequences hard to tease out (i.e., was our result due to the mechanism of the disease itself or a reaction to the variable, which is not found in human subjects?) Something to make you go “hmmm”. ]

Drug development continued and it was finally approved for the Relapsing-Remitting form of MS (RRMS) in 1996.

Some researchers believe that it acts as faux material to lure and distract the attacking cells away from their real target, but others believe it actually alters the body’s immune function itself. Concerns about this persist but there is no evidence yet to prove it.

Anyway, my neuro switched me to this. I administered myself sub-cutaneous shots of 20mg daily for 7 years, from June 2003 until July 2010.

More recently the FDA has approved a newer 40mg dose injected only 3 times a week, and there are some reports that those taking the higher dose less often have fewer side effects. But the lower dose and schedule are still used as well.

Ugh

I’m not sure if I would’ve welcomed news of a less frequent dosing option. I hated the shot I took everyday, and I doubt a higher dosage less often would’ve made that much difference.

I rotated injection spots on my body as I was instructed, but no matter where I shot, it felt like I was injecting acid.

For the first few years, I tried to dutifully apply ice packs to the area, both before and after it, as I was told, but it always seemed to make it worse.

Finally one day I tried heat instead. Ahhh, the relief!

Who’s In Charge Here?

Wanting to check that I wasn’t harming things, I called the helpline. But the nurse on the other end told me that she hadn’t received any information ether way. But as far as she understood it, it wasn’t affected by heat.

We decided that if a heating pad worked for me, I could continue doing it until I heard otherwise.

And as I was looking over new prescribing documents about this drug, I found this: “Before use, allow the solution to warm to room temperature.” Doh! Why didn’t I think of that?

Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.

The liver is described on WebMD as “a large, meaty organ that sits on the right side of the belly. Weighing about 3 pounds, the liver is reddish-brown in color and feels rubbery to the touch.”

It goes on to say that “The liver’s main job is to filter the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. As it does so, the liver secretes bile that ends up back in the intestines.”

Anyway, the ER doc drew several vials of blood and then ordered me home to await the results. Based on my yellow-ness, he was expecting to have to admit me to the hospital.

Luckily the tests came back as “consistent with damage from toxins, probably medications” and no hospitalization was required. But I was directed to stay home from work on short-term disability while my liver recovered.

I also had to go for biweekly blood tests for the next two months, then monthly for the rest of a year.

I actually got “get well” flowers from work, and after five weeks returned to my full-time duties, good as new.

The Biopsy

In Sept. I had to have an out-patient liver biopsy to make sure this was just a drug-induced hepatitis. The ruling was that any interferon –which was almost all of the MS drugs at the time– were now off-limits to me.

While doctors assured me that my liver enzyme levels had gone back down to normal, I wondered if I could help keep it that way. So I did a little online research on which foods and supplements might help.

The liver is arguably your hardest-working organ, takes a lot of abuse and is one of the easiest to damage. Luckily, it is able to regenerate itself better than any other, too, so it is important to take care of it!

A younger sibling to Betaseron, Avonex was approved by the FDA in May 1996. It is also an interferon – beta 1A versus beta 1b – and it works in a similar way, attempting to tamp down the inflammation in the brain.

Most people who take any of the interferons “will have flu-like symptoms” early in the course of therapy (emphasis mine). So the instructions recommended I take it with something like ibuprofen to reduce the expected fever.

These days it comes in other forms, like a prefilled syringe or even an epi-type pen, but back then each dose came as a kit with a vial of powder, a “diluent” (water), a syringe and needle, plus various small packets of rubbing alcohol and bandages.

My regular deliveries also included a small sharp’s container for disposal of used syringes and needles.

Learning to Inject Myself

Avonex would require that I give myself a shot every week. So naturally I asked my friend and neighbor to join me at the training session so we both could administer it to me.

It was kind of eye-opening that sticking a needle into an orange was so similar to giving myself a shot. I was surprised at how easy it slid into the skin. I don’t know why but I expected some resistance!

The nice thing about Avonex is that it is a weekly injection. So I never had to alternate injection spots.

But one problem I had at that time was what to do with the full sharp’s containers. There didn’t seem to be a standard procedure for how to dispose of needles, much less a sharp’s container.

Now I notice an instruction on the directions: “Check with your healthcare provider about the right way to throw away the container. There may be local or state laws about how to throw away the used syringes and needles. “

My First Shot

The first time I did my injection I deliberately did not take it with ibuprofen because I wanted to see how severe the fever would get. Lo and behold, it did.

Later I was scolded by a doctor friend of mine. She said that since fever is a warning signal to the body, and since I had been warned to take something with the injection for just that, I should’ve just done it to begin with! I always did after that.

But I never could learn to inject myself with ease. Every week I sat holding the shot in my hand above my thigh willing myself to just plunge it in.

I Develop Jaundice

Then one day I couldn’t keep my breakfast down, vomiting. Next I was walking by the mirror and I noticed that my eyeballs were yellow. So I went to an emergency clinic where I was diagnosed with severe liver toxicity. I was told to stop the Avonex immediately.

Unfortunately this meant that any interferons were now off-limits to me. That was most everything else on the market for MS at the time. But not everything.

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About This Site

I am not a medical professional but I am a Librarian with a capital “L” because I got a Master’s degree in it. I’m a professional researcher. But everything posted here should still be confirmed with your own research.